Wednesday, February 22, 2017

Affective Needs--Chapter Ten

Karen,
for almost my entire visit, sat staring blankly at an old box television
showing reruns of Friends in the community room of Harmony House.

The director of the facility,
Samantha, had greeted me when I first arrived. “Almost no one ever comes to see
her anymore. She’ll be happy to have the company.”

“Does anyone visit her?”

Samantha hesitated. “Not
really. There’s this lawyer from New York who comes once a month.” Her tone was
suddenly sharp and annoyed. “Makes sure we’re treating her right, I suppose.
But other than that, she’s a ward of the state . . . and she doesn’t have any
family, at least not any who are allowed contact with her. The researchers who
used to run her through a million tests when she was first discovered are
barred from having any access to her now.”

My mother and Samantha were
acquaintances, fellow alumni from graduate school, which was why I was allowed
to come here in the first place. So I knew some of Karen’s history. When she
was two years old, her father, who must have been completely insane, started
keeping Karen locked in her room day and night and wouldn’t allow anyone else
in the family to even speak to her. Ever. When she was fourteen, she was
accidentally discovered when her father fell asleep in his bed smoking a
cigarette and the house caught fire.

When the firefighters arrived
at the home, Karen’s mother had managed to escape through her bedroom window
and told them that her husband and son were still trapped inside. She didn’t
even mention Karen. Inside the blazing house, the firefighters had no idea
where any of the other family members might be. When they came to a door on the
second floor that was padlocked on the outside, they broke it down and found
Karen, cowering in her dirty rags, locked inside the chicken-wire cage where
her father kept her day and night.

They broke her out and
carried her to the waiting ambulance. Her father and older brother were already
dead from smoke inhalation.

Karen was so malnourished and
small, medical staff at first thought she was six or seven years old instead of
fourteen. When the mother, free of her husband’s abusive control, finally
started to speak and tell them what Karen’s living conditions had been like for
the previous twelve years, the news story was an international scandal, and
researchers from all over the world wanted the opportunity to study and test
Karen. Many of them did, until she turned eighteen and it was determined that
all of their interference was having a negative impact on Karen’s development
and improvements.

Karen was in her early
thirties now. It had been almost twelve years since anyone had been allowed to
study her—and yet here I was, a stupid high school student, sitting, staring at
Karen staring at the TV. A blank notebook in my lap and a pen squeezed between
fingers that hadn’t written a word.

All those researchers would
probably kill each other to have the chance I was wasting right this very
minute.

Of course, the only reason I
was allowed here was because I wasn’t a real researcher—not yet anyway.
Also, I wasn’t exactly studying Karen specifically, just making observations,
and nothing I would write would or could be linked directly back to Karen. A
simple comparison between two people, both with cognitive disabilities, one who
was raised in a caring and loving home and had access to professional education
all her life—and one who had none of these things.

This was the heart of my
senior honors thesis—nature versus nurture. How were Maggie and Karen
fundamentally different because of the vastly different environments they had
grown up in?

I glanced at my phone, only
fifteen minutes until my first scheduled observation was over. The blank notebook
seemed to glare up at me, so I forced myself to sit up straighter and
concentrate, think of something to write—anything.

My eyes drifted to the
television and the purple-walled apartment of the main characters, who were
sitting on the couch exchanging snarky one-liners while the laugh track played
along in the background.

I wrote, The subject spent
the entire time staring at first one episode of Friends, and then
another. Truly, this was groundbreaking stuff. The admissions board at
Princeton was going to thank their lucky stars they had snatched me up with
that early offer into their neuroscience department.

I sighed and closed the
notebook.

Samantha was wrong: Karen
didn’t look happy to have the company, she didn’t look like she knew anyone else
was even in the room. Completely the opposite of Maggie, who would smile and
jump and rush to get me to play a game with . . .

Of course. How could I have
been so stupid? I opened my notebook back up. I had been waiting all this time
for Karen to do something, show some sign of engagement, with me, with her
surroundings. Some sort of behavior I could observe—anything. But the very fact
that she didn’t, wasn’t that something? Some huge way that she and Maggie were
different?

Even though Maggie had a cognitive
disability, she talked, moved, played—interacted with her world. Maggie had the
skills required to have relationships with other people.

I was beginning to think that
Karen didn’t have any of these skills—because she had been so horribly deprived
of ever learning how.

What would that be
like—locked away, every day of your entire childhood? Did her father think that
it simply didn’t matter because she was cognitively disabled? Was he ashamed of
her? How could a person be that cruel?

The door behind me opened.
Karen didn’t move a muscle, but when I turned I saw Samantha coming in: my
signal that our time was up.

“Well, how was the visit?”
Her tone was light, like before, but her expression looked strained. Something
was worrying her.

“Fine,” I said, as I packed
away my notebook and pen. “Not much happened.”

The director nodded as she
glanced at Karen. “She doesn’t have many words, and the ones she does have are
used as single words . . . like when she wants something. Food, a drink, her
favorite doll. That was one thing the researchers did determine before they
were forbidden to examine her anymore, that because she had missed out on
hearing language during a key point in her early development, she missed out on
the opportunity to ever really acquire any functional use of language.”

I looked at Karen, still
staring at the TV. “She couldn’t learn, even after they found her?”

The director shook her head.
“Apparently, there’s a window for language acquisition, when we are very
young—she missed hers.”

It was awful. I imagined her
initial cognitive difficulties also made it more difficult for Karen to learn
language once she had been found. Maggie had learned many, many things in her
life—but she was still nowhere near a typical seventeen-year-old. Karen had the
delays, on top of never having been taught anything. Even twenty years in a
supportive environment hadn’t been able to correct all that she had lost.

I pulled my keys from the
side pocket and swung my bag over my shoulder. “Can I come back next week?
Maybe during a different time of day when she’s a little more . . . active?”
Surely Karen didn’t always just sit and stare at the television. “Maybe
during her dinnertime?” I was hopeful that I could catch her doing
something—anything.

The director was biting her
lower lip and her worried expression had returned. “I’m not sure, Ruth.”

Something had
happened. When my mother first contacted Samantha and asked for this favor, she
had enthusiastically agreed. I didn’t understand where this sudden hesitation
was coming from—I worried it was me. “Did I do something, something wrong?”

“No!” she shook her head.
“No, not at all,” she sighed. “While you were here, that lawyer, the one from
New York I told you about, called to check up on Karen. I happened to mention
that she had a visitor—I thought it was a good thing . . . but she got
pretty upset.”

“The lawyer?”

“Yes.”

“Why? I mean, it’s not like I
even did anything,” I said, thinking of my paltry notes. “All I did was watch
her watch TV.”

Samantha shook her head, “I
know, and to be honest with you, there isn’t anything wrong, legally, with you
coming here under my direct supervision. So long as I have the final say on
anything you write, remember. When I think about it, I’m not really sure why
Ms. Atwater is so upset.” Her brow wrinkled as she stared at a spot somewhere
in front of her field of vision, as if she were trying to figure it all out.
“Or even if she has the right to be, for that matter . . . it’s not like she’s
Karen’s legal guardian.”

She fell silent and a moment
later shifted her gaze to me. “Don’t worry. This isn’t your problem; I’ll
figure it out. When do you want to come next week?”

I thought about my schedule
for half a second. “Monday?”

She nodded. “Okay, same time,
same place.” She smiled, but I could tell she was still a little worried about
the lawyer.

“Thanks again. I really
appreciate this,” I said as I reached out to shake Samantha’s hand. I turned to
Karen; basic social grace urged me to at least say good-bye to the someone I
had been staring at for over an hour—but it felt weird since I doubted she’d
even realized I was here in the first place. I decided to forget about it but
when I started to turn around—Karen raised her hand.

I froze and watched. With her
eyes still glued to the TV, the four fingers on her raised hand moved up and
down, up and down, and then she lowered her hand.

This whole time, I didn’t
think she was even aware I was in the room—but she just said “Good-bye” to me
in sign language.

“Good-bye,” I said back.

But she didn’t
move again.

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you for reading chapter ten of Affective Needs. A new chapter is
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